Marysmom: 3 days since last risperidone shot

[marysmom]

My daughter has been frantic to get off risperidone pills for many years. She absolutely despises this (and most other) antipsychotic drugs. Recently she was told by a new p-doc that she had to take the shots or be hospitalized because of symptoms of extreme paranoia and lack of self care. She has always insisted that the meds are the problem ever since her son was born 22 years ago and a postpartum psychosis was later diagnosed as paranoid schizophrenia. No one else believed that because even prior to the pregnancy she was experiencing delusions. Even as a kid, she was always the "odd duck" but we always thought she'd outgrow it. She never did.

 

Her brother went with her to see the new p-doc last Thursday and he agreed to change her to a paliperidone shot. She was due to see her clinician on Friday for the (second, I think) risperiodone shot but the p-doc agreed to let her wait until Monday when the paliperidone would be available.  On Monday, she arrived for her appointment but was told she'd have to wait until Wednesday (we live in a very small, rural town so I'm thinking the local pharmacies are out of paliperidone). I have promised to go with her to the clinician on Wednesday when it will be 5 full days since she was scheduled for a shot.  If she is still well, she wants to just say NO and walk away.

 

Meanwhile, she's great. Usually she's miserable. Now, she's happy. Usually she's paranoid and makes NO sense at all. Now she's not just coherent, she's brimming with hope and talks exactly like anyone who is well. As I write this, I can't believe how normal she is.

 

I would really appreciate any comments. I've since read that some people do just kick these strong drugs with no problems. Rare but it happens. Obviously, it's too early to know what's next for her. She could be in huge trouble, I know, but there isn't much I can do about it. She's 44 years old, lives on her own, is really smart, and possibly the most determined person I've ever met. 

 

To tell the truth, I'm scared to death.

 

 

[Adagiooo]

Hello marysmom, first let me say I completely sympathize with your daughter. Risperdal really saps you of all of your energy ( which is the possible reason for her lack of self care) and causes a whole host of other side effects which are too numerous to list. It truly is the drug from hell. I'm so sorry she's going through this and I'm so sorry you have to watch your daughter suffer.

 

I'm hoping that someone who is more knowledgable that me chimes in to give you some comprehensive advice.

 

With that being said, the risperdone shots take time to exit the body. Your daugher's lift in mood and clarity is a good sign that the side effects are abating, but I would caution you that just not taking the drug anymore, "cold turkey", could be a mistake. She may feel good for a time and then get hit with a sudden and terrifying bout of insomnia. Additionally she could experience rebound psychosis that her doctor would surely mistake for a return of symptoms when, in fact it would probably be due to the cold turkying off the risperdone. But as you said, your daughter is determined. She may just make it. I don't know a lot about the shots as I've only taken the pills and liquid and it's been my experience that dropping big doses makes you feel great because the side effects go away, but the crash does eventually come.

 

 

I don't really know what to advise, but I think if she reinstated a relatively low dose of the pills or liquid say .50 or .75 mg and then do a slow taper from there she might be ok.

 

When your daughter was experiencing extreme paranoia was she taking any risperdone and if so at what dose.

 

As for the paliperidone, I took two shots of that drug and it is as bad as the risperdone in terms of side effects. In fact, it's considered a patent extender for risperdone because I believe Johnson and Johnson only changed one molecule in risperdone and called it paliperidone to start with a new patent. So...

 

Personally, I believe the shots, be it risperdone or paliperidone are the worst of the worst when it comes to antipsychotics. I've read that they can take up to a year to clear our of the body. The source was a layperson but still, I wouldn't want any drug lingering in my system that long after going off of it.

 

Tell your daughter to stay strong and hold on. With her determination she's going to make it off that drug from hell one way or the other.

[Altostrata]

Welcome, Marysmom.

 

It sounds like your daughter has been taking risperidone pills, she's been off the drug while she waits for a risperidone shot?

 

Is her legal status such that she cannot refuse the drugs?

 

Since it sounds like she's gone cold-turkey off the pills, I sincerely hope she does not suffer withdrawal symptoms. If she does, it's very likely those withdrawal symptoms will be taken as evidence she must be drugged.

 

Are you able to find another psychiatrist, one who will assist her in minimizing her drugs?

[tyson]

Hi, Marysmom

 

I just want throw some words with your strugle to help your daughter. Since I'm helping my son withdrawing from these drugs. ( not medication). His first drug from his p.doc. was respiradole pills. They started him with the highest amount. After three months, he droped it cold turkey. He felt good and looked fine like you said about your daughter. But after four weeks, he crashed so bad that we took him to the hosp. There they started him with new abilify drug. So, from my experience, I would say first, put her back the last minimum dose she was or where she was at stable dose. Then find a new doc who understands and helps with your withdrawal. because I agree with her that the drugs are making her sick.

finally, i would check with a nutritionist, since our nutrition is part of our healing from these drugs.

My son started on zyprexa 15mg two years ago, today he's on 3mg. he is 23years old, very tough age to accept or fellow advice or any needed staf. but we are holding step by step. So, I hope your daughter will have good outcome. wish you the best for your and her. good luck.  

[marysmom]

Thank you so much to everyone who responded. My daughter is still doing great. It's now 8 days since she was due for her risperidone shot (so over 3 weeks since her last shot).  She is not certified so she can legally refuse the shot. I have a friend who is a very well qualified psych nurse and mental health clinician (recently retired) who suspects my daugher may have experienced a true reaction to the shot. She actually knew of a patient on the respiridone shot who kept saying, "this is killing me" and "I can't breathe" and then died, in the hospital, of some kind of allergic reaction that shut down her breathing. If Mary has to go back on antipsychotics at some point, we will make sure it's on pills. 

 

I'm reading a book called Psychotherapy for Schizophrenia by Bertram Karon. He says psychotherapy usually works extremely well with schizophrenia but requires  patience and some additional skills that most p-docs don't have. I happen to know an excellent therapist who has used Karon's methods successfully. Maybe I can arrange for him to work with my daughter, even if she eventually has to go back on drugs.

 

Adagiooo, thanks for the information about paliperidone. One molecule different, huh? Interesting.

[Altostrata]

Psychiatric drugs are usually prescribed at excessive dosages. See the writings of Dr. Sandra Steingard, such as Psychiatrist: Some patients are better off without antipsychotic drugs